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Author
Topic: My first few weeks! (Read 2787 times)

Hi, I am 24 years old and I was just recently diagnosed HIV+ on 4/21/14. However cliche it may sound the 22nd was the 1st day of the rest of my life. So much has been going on since then. So many feelings and emotions, ups and downs, and twists and turns. I really have found great solace in reading your guys' posts. I guess I'm just now getting the nerve to post here lol, but honestly it is about time.

It feels like a lot has happened since I have been diagnosed and in the same sense it feels like nothing is happening.

When I found out my status from the doctor of course it hit me like a brick wall. My whole world fell and my stomach dropped to the floor. The first day was definitely the hardest. I didn't know what to say or ask instead I sat on the phone in silence. After that I called my mother and chatted for a bit before I just blurted out the news I had just received. Then came telling my partner which was by far the hardest part of this whole process. I read online tips on how to break the news but honestly nothing helped. I read where some people would go days, weeks, even months where they didn't tell there partner. I just couldn't understand that so I ended up letting it out of the bag that same afternoon. Some back story we do not live together but have been together for the past 5 years. It is my first real relationship and we've been through the ringer but we always have persevered. My partner initially took the news well. Of course though if I tested positive then it was likely he would be + as well. The next day came and I had time to process and take in everything that had happened the day before. I called the doctor back who broke the news to me (a gastroenterologist) and asked him what I needed to do from here and he told me of course to go to an ID doctor and get started with my treatment. It was a good talk and honestly I felt a lot better about the situation. I mean don't get me wrong being (+) is not something I would have ever wished for but it had happened and it wasn't going to change. So my take on it was that it isn't going to be the end of my life, and I'm going to do whatever I have to do to be as healthy as possible and enjoy my life. My partner at first was supportive and sd that we would get through this together and will always be here for one another, but was still very worried and concerned with himself being he hadn't been diagnosed yet. Well he ended up telling his parents who he lives with and they basically forbid him from seeing me. After that he ended up going to an ID doctor and got tested, confirmed, and had labs ran all in one visit. Meanwhile my ID dr. appointment was scheduled and I was waiting to get that ball rolling. We still said we would be there for one another being pretty much all we had were each other. Things were okay honestly he was more of a worry wart with the diagnosis thinking that he may die and what if this and that while I was more of the let's pick up move on and live our lives. He just said we needed to give his family some time and work through this. Well slowly I felt him receding. One less call here and two less texts there.

That pretty much brings us to where I am now. I have been to my first ID doctor visit this week actually on 05/08 which was honestly underwhelming. I mean I'm happy to have everything on it's way to normalcy but the doctor just seemed kind of disconnected. When he first came in he was telling me about hiv but it felt like he was reading from a script. Just was very blasé. I mean I am a naturally anxious person which honestly suckssss! I found myself wanting reassurance from this visit and I'm not sure if that's what I got. Honestly it had me a bit confused lol, it took all of twenty or thirty minutes maybe. Basically he sd we obviously can't do anything until my counts come back which is understandable. He also did a basic little check up with stethoscope and checked my lymph nodes ran through a quick history and sd he would see me in 6 weeks! He sd that I sounded fine and looked fine and I will be okay. But 6 weeks that just floored me; it felt like such a long follow up time. I have my next appt scheduled for 06/17 and I'm going to give this guy a chance but I do have my reservations. I am happy though at least to have the whole process started. Now my primary concern as far as the medical aspect of it is navigating the prescription insurance maze to get the meds I need once they are prescribed. That is my obsession now lol!

As for as my partner and me, I find myself at a crossroad. I want for us to work and really wish that we can but honestly I'm feeling more and more everyday that it is the less likely scenario. He has really kind of withdrew and just isn't there anymore. At least that's what it feels like to me. He says that he is still there but it is just a lot for him to handle which I get but don't string me along. He talks less and less and honestly just isn't being the support that I find myself to need. That really sucks because I had isolated myself from my friends to be in this relationship so now I just feel alone sometimes. I mean I have a few people like my mom, one coworker, and a cousin but none of them can be there all the time. I mean don't get me wrong I'm thankful for that and I'm not a weeny who needs to be coddled constantly but a little outside support would be nice even if it is just doing things to take my mind off of the situation. The question is just is this relationship really worth it? Should I fight for something if I'm the only who still wants it? I'm not looking for the answers but it just sucks to be in the balance like this. It just feels to me like if someone isn't here for me at my weakest then why should I have them here at my strongest.

It really feels nice to voice my thoughts and experiences. I guess I'm just taking it one day at a time. I am going to live my life and make the best of it. Honestly my diagnosis has really kind of been a wake up call to be happy. That's what is important, not to take life for granted. I know I will get through this and I am optimistic but it just comes in waves. Those damn waves can really be a doozy sometimes though.

Anyways thanks for listening/reading my experience. I really have enjoyed your experiences and am glad to have found this place. It's nice to have a vent with people who get "it." To anybody else newly finding out their (+) status I just hope that you understand that this will be whatever you make of it. Take it one day at a time and don't let it bring you down.

There's an "Modify" button on your existing posts which you can use to correct grammar mistakes. Just FYI..

I'm not too sure how your gastroenterologist can conclude that you have HIV. So you should wait for your ID doctor to confirm with a WB that you have HIV. But if your partner has been diagnosed and confirmed to be HIV+ as well, then the chances are probably very slim that you have a false positive.

Regardless, I hope you are coping well with such a news. Don't be surprised if your ID doc treats it like its no big deal. Medically, it kinda isn't. Its really not a case of doctors looking at your results, shaking their head and suggesting medical trial for you to enroll in. The science behind how to keep HIV from killing us is well understood, so there's no black art in terms of finding the right therapy (*in most cases).

Most of us here at some point would have experienced the 'blind support' by our loved ones. The kind where they tell you, almost as if by instinct, that they are here for you and will support you no matter what. Only to see them start acting weird and differently later on. To be fair to them, hearing that someone you love has HIV is also devastating. This forum has one section dedicated for that! So give the people around you some time and space to adjust.

Lol thanks for the modify option, I was looking for that but couldn't find it!

The gastro ended up running a blood panel that included hiv after I had a colonoscopy done. That's how he found out, I believe it was just a reactive test (elisa). But honestly with that and my partner being (+) as well it's pretty much a certainty. As a formality though the ID doc is running a WB along with my cd4 and viral counts.

Honestly "YellowFever" I am feeling okay about it. Like I said previously I would never want this purposefully but who would. It's what is in my cards though and there is no changing it so the best I can do is take the steps to get healthy and control it and enjoy my life. Thanks though because I was whether curious about my doctors behavior lol! He just threw me off a bit. But I have to realize to he deals with this on a normal basis so it's not as fresh to him lol. You are right though it isn't a difficult disease to treat and that is a good thing. Quite honestly it isn't the being sick part that really gets me. I can handle that. It is more the stigma attached to the virus. But I'm alive and I have hope and things to look forward to so that's what really counts.

You are right about our loved ones though. They cope and process this just like we do. Surprisingly my mom has taken it very well and she has become my kick in the behind so to speak. My partner just surprises me is all. But I do need to give him time to deal with this as well. I'm not the only going through this new territory so I know it must be confusing for him just as it is for me. I'm probably being selfish in this aspect and can benefit from lowering my expectations.

I know it just takes time. Over time it will work itself out and things will settle however they are supposed to be. I can just be a bit impatient lol! But it is something I'm learning to appreciate and accept. Patience that is, more patience less worry more enjoyment!

I am curious how old your partner is? His parents can't dictate his actions, unless of course through financial or emotional blackmail.

I'm not sure why he would pull away - maybe its the shock and he doesn't have much spare energy, at the moment. You can be frank about your worries - maybe they are baseless.

It seems to me you shouldn't have to wait 6 weeks to get your labs. I can see waiting 6 weeks for the doctor appointment, maybe, but the labs should be provided by email or over the phone. You may have to ask for this, firmly. 6 weeks is too long to wait and worry. Especially since you are waiting for WB confirmation! Obviously you want and need to know where you are.

If you are HIV+, don't assume the doctor is going to recommend treatment right away. The numbers might not warrant that. You can make up your own mind, too, about your preferences for when to start treatment.

(Is this the USA? Does the patient get to decide for early treatment, with no insurance hassles? I don't know. In some countries the patient doesn't get to decide.)

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“From each, according to his ability; to each, according to his need” 1875 K Marx

Lol, he is about to be thirty this year. It is a rather complex situation his family dynamic. He is the one his parents and family including his siblings lean on. To be honest I don't think they ever liked the fact of him being gay and then now this well I guess it is too much. Basically his mom feels as if i never made an effort to connect with them and now I've "done this" to her baby so this is all she knows of me. So he is pretty much at the point where feels he has disgraced his family and he should just put his life on pause and be there to support them for the rest of his years. Which I'm the complete opposite. This makes me want to enjoy and really savor my life more. Just ended up being a screwy situation I guess.

I know the labs are supposed to come back within a couple weeks the doctor did say that. I did ask about checking the #'s online or some format like that and he sd that he didn't think it was good to give those to patients when they are alone basically. So he ended up scheduling me the 6 weeks out for my results and appointment. Honestly I'm not going to stress about it. At least I'm going to try not to. But really what is a month in the scheme of things I guess. I just hope that if they are low or kind of in the grounds of being opportunistic for ailments that they call me and schedule my appointment sooner!!!

As for treatment I've been reading up a lot and it seems the general consensus now is that the sooner you start the better and honestly I'm fine with that. At least that way I will feel like I'm actually doing something to take care of myself. So i'm thinking I'll obsess less lol!

But yes it is the USA and I do have medical insurance. My only concern is once I start treatment navigating my prescription plan to get the meds I have read some horror stories lol.

Well I'm repeating myself but I believe 6 weeks is too long to wait. The lab work is done quickly, a few days. And you need a WB confirmation! What city? Do you have a choice of ID docs? Personally I think you need to insist on a WB confirmation this coming week.

If there is a power imbalance between you and your doc, yeah, you may need a different doc. You can just go to your generalist, by the way. Call up your regular doc and see him/her and get that confirmation and while your at it, get the ID to fax your results to your general doc.

If you are HIV+, then contact an ASO to figure out the complexities of the cost.

Logged

“From each, according to his ability; to each, according to his need” 1875 K Marx

Seconding Mecch's thoughts on 6 weeks being too long, should just need to wait 2-3 for resistance test results. I'd call at least at 2 weeks for western blot confirmation, viral load and cd4 number.

Does your insurance have a separate medication deductible? If it does, you may want to talk to an ASO for assistance options as Mecch mentioned, if not, you should be ok without. Your doc/pharmacist will handle preauth requirements. It's possible you'll have to use a mail order or specialty pharmacy though. Make sure to sign up for the copay assistance cards once you've chosen medications.

If your bloodwork was done via LabCorp, you can sign up and get your results online. For Quest you can also get them online, but need a code from your Doctor too.

Hello fdzst08 and welcome to the forum. Your posts are quite thoughtful and well-written, and I have a feeling you're going to adjust to this "new normal" just fine.

I gotta agree with mecch & AusShep, you shouldn't have to wait 6 weeks for your labs. If you are indeed confirmed poz with the WB, that info should be provided to you asap. Phone, email, whatever. Also, viral load & CD4 shouldn't take more than a week or two. Genotype will take longer, and I can understand why a doc would hold off on giving you that info until your next visit, when treatment options could be discussed.

You mention that your ID doc seemed businesslike and not very empathetic. That's not ideal, but also not uncommon, I think. Unless people have highly drug resistant strains, the treatment and monitoring protocols are pretty straightforward these days. However, HIV is still a BIG DEAL to patients emotionally, and that needs to be recognized. You might check with a local ASO to see if there is a support group to meet up with.

I don't know what to say about your bf. Any 30 y/o man who lets his parents have veto power over his relationship is a bit of a question mark, in my mind. Obviously if he's also poz there is a going to be a lot of stress, grief, and maybe blame. Look for support outside that relationship if need be.

Thanks for your guys' advice about the 6 weeks deal.It kind of lit a fire under me and I looked into it a bit.My blood work was ran through Quest Diagnostics so I created an account with them and they will release my results to me once they are processed. This is through their MyQuest 360 portal and there isn't a pin necessary just for the lab results. So if anybody uses them that may be helpful information.

I had submitted a request yesterday via the portal and they said I should have the results within a week, so fingers crossed lol!

As for the Doctor, Mecch I live in an area in Texas called "The Golden Triangle" it is encompassed by 3 smaller cities so there aren't as many choices as if I were in a big city. The nearest large city like that would be Houston and it is about 1hr1/2 to 2hrs away. I mean that would be a doable scenario if necessary but it wouldn't be ideal because I'd have to take off from work for the appointments. That's why I opted for a specialist a little closer to home. There are a couple more in my area I do believe but this practice comes highly recommended and are supposed to be the best in the area. There are two who work there. I was actually supposed to see the other doctor there but honestly from what I hear his personality isn't any better. I'm going to give this guy a shot with the next appointment and if it doesn't give me that "feeling" then I'll probably be making the pilgrimage to Houston every few mos.

I'm just hoping we can get my #'s and put me on treatment. I know it isn't complicated so I'm just like let's get it done!

As for the medical insurance I have medical through Aetna and then my prescription plan is through MedCo (Express-Scripts). I don't know if it has a deductible. I don't believe it does. I hope not lol. I'm hoping it will cover a good amount. Also if not though I have a secondary insurance and that prescription plan is through Cvs/Caremark. I don't know if y'all have any experience with either of those companies?

Vertigo though you do make a point. I have wondered this myself. Will our relationship always be dictated by his family? Is that what I want to deal with for the rest of my life? Honestly I don't care for it too much lol. Like I've said I want us to work but I'm coming to the realization that if it doesn't I will be okay. The world is still going to spin and the sun will still rise. May be hard initially but I'll get past it. I'm just going to give him the time and space that he "implies" he needs and whatever will be will be lol! The outside support I think would be a good idea. I mean he's going through this himself as well so I definitely don't expect him to be able to carry me through it lol. The only bad thing is most of my friends I kind of disconnected from while being in this relationship. I mean sure they will message me sometimes and ask me to hangout or what not but I don't b/c I don't want the partner or them to take it the wrong way. As for the partner I don't want him to be like the first opportunity you have w/out me you run back to them and for them I don't want to be like hi, I'm only talking to you now because I have HIV lol.

Honestly I already know the answer. I just need to be a big boy and put on those pants and not let how I believe other people may react affect what I do. I gotta work on me and really it'd be nice to have people around while doing that. So I just have to DO IT! Lol.

Excuse this question that I'm sure has an obvious answer, but what is exactly an ASO?

ASO is an AIDS Service Organization. They'll typically have free HIV testing (often they're the ones that set up free testing in certain bars/clubs too at certain times during the week), possibly other medical services, and experts/counselors that can help with Ryan White funding, AIDS Drug Assistance Programs (ADAP), getting appointments set up with doctors, etc. for those in need or with limited/no insurance.

Good info on Quest, I'll try again. I was trying to get results from a doctor I had in another State several years ago and it said I needed a PIN from the doctor, maybe I was in the wrong place or because the data was too old.

Not to hijack fzdst08's thread, but Quest also has an iPhone app for test results called Gazellle. No PIN code required.

Fzdst80 - sorry to hear of your Dx, but happy you found this board. If you are like me, I think you will find this an excellent resource for knowledge, comfort and even a little humor. My best to you as you begin this new chapter in life. Rest assured it does get better.

AusShep there are two options on the quest website. One to actually request your labs and one to connect through the doctor. The doctor connection is the one that requires the pin but you still can get your lab results just via the normal request.

I had gotten the labs my gastro had ran whenever I logged in for the first time so now I'm just waiting for the new ones lol! They also do have the apps for both iPhone and Android.

Thanks Piscesan I'm certainly glad I found my way here as well. You're so right about these boards lol. They are way more informative and stress alleviating than any other literature lol. Thanks for the sentiments! I really appreciate them. I know it will get better. It'll just take some time is all. But I definitely look forward to it!

HiI was also recently diagnosed, you seem to be handling it so much better than I am.Im also 21 & I feel like my world is over, im so scared I cang eat or sleep, how did you guys get through this Im trying to calm myself down but it seems so hard.

Sorry about your diagnosis! Really it sucks quite honestly. Nobody wants this or to have to deal with it. I'm relatively new to this as well so there is no sage advice I can supply but I can tell you about my experience and what helps me.

To me personally there are two ways to deal with this, two kinds of people. One you let this crush you and control your life or two you take it in stride and use it as a lesson and try and make the best of your life and the circumstances. Don't get me wrong when I first found out I was crushed but that is where you decide when to pick yourself up and what you're going to do with the rest of your life. Being so young and dealing with this I know is hard but our young age can also be an ally with our strength hopefully physically.

I found it better for me to do things that I liked and enjoyed. For example going to the mall, going out to eat, or watching my favorite tv shows. I did/do hangout with my one coworker quite a bit too. Just anything to get out and keep my mind moving. You really need to try and be around people this first while and have their support and just the mental break from it all. You will obsess and obsess and again obsess over it but that will pass I promise. Your life will not be over. Don't let this define you. Only you can decide how long you'll let it (HIV) hold you down.

Diagnosis is the first step. I'm going to tell you something my gastro doctor told me after he told me I tested positive. HIV is a chronic condition now. "It can be treated and you can have normal life." Educate, educate, educate yourself about it! You need to see an ID doctor and get yourself on treatment. "This IS NOT something you can put your head in the sand about." You need to address it now, the sooner you do the better.

I know it is hard. You will get past the initial shock and scare. Things will be okay. Do what you know you need to do (doc, med,follow up) and do what you like to do (friends,family,outings). I found it better not to just sit at home.

Anyways good luck Dealing. I'm glad you found this forum. It is nice to have people to talk to who know what your going through. This was a blessing for me to find this group and I'm sure it will be for you. Take advantage of it.

Reading your post makes me feel like going back to that day where I had the result of my test, how my x.bf reacted, how I become depressed and everything seems to be not the way I've wanted. I'm sorry that you have to experience this situation, and like me, you'll get over it. Consider yourself as a strong man, you were able to bring it out immediately to the people who are close to you, unlike me which I haven't bring the news to my family (which is 2months now that I am GAY HIV+!) which they live thousand miles away from me.

Please don't think that you are alone, it's not the end. I'm telling you this as we have a very similar experience. I had my diagnosis last 03/15/14 @24, 2 months of struggle to get my test result and meds from Bangkok (as I'm a foreigner here, and foreigner + is not allowed here once they found out!cross finger) and here I am now, replying your post with the good news that It's TRUE! True that it will change your life, the restrictions/limitations and being self defensive (sometimes).

But just to let you know, for what I've experienced, you will be emotional as ever you've been, just let it out, it's okay, It's part of the process until you will get to the point of complete acceptance.

Now, just to give you a heads up, think of something that you want, try to put a goal (a small goal for the start up of this is preferrable) and make that happen. Make something that will make you feel yourself back. For me, my first struggle was catching the ID doctor in Bkk plus the flight (that must be syncronised with my offdays), and keep my status hidden from the authority. Make sure you will stick to that goal and be open to changes (if needed). And lastly, be patient (i'm lucky I have this), waiting for resistant test, WB result, anal papsmear result and my meds is a very long process.

Fzdst08, wherever you are now, if you need someone to talk to when you feeling alone, we're all just here. (Please understand if my English is not that good as it is not my first language).

Sorry for delay has been a long week lol. But honestly I hear you. I know this isn't the end. It will only be if I choose it and I do not. So no closing chapters any time soon. I'm glad we can relate to each other's experiences it helps to process when you have others who you see going through same situations.

As for telling people you will get there. I've only told select people but honestly it is such a huge weight lifted after you talk about it. I found myself this week wanting to tell several people because I know I would feel so much better and lighter but I ended up not. Maybe next time! It is work people I mean. I just don't wanna be seen as weak or any different.

But I hope that one day you're able to share with the people that you see fit and are comfortable with. Hate your present situation, that does suck having to worry about authorities/government hopefully you're able to navigate that situation discretely and successfully.

Patience is something I'm working on but I am kind of a type A personality lol! But each day I'll get better. Anyways thank you. You aren't alone either. Ever need an ear let me know. Your English is spot on!!! 😀 so take pride in that. Keep us updated on your situation.